Rick Stiebel/B次元官网网址 staff

Imagine what students gathering information from around the world could accomplish in the search for a cure to a rare disease.

Blau syndrome is a progressive inflammatory disorder that commonly affects the skin, joints and eyes, explained Troy Townsin, the father of a child living with the painful condition. Small, hard lumps that form on the skin and organs are some of the symptoms typical of Blau syndrome.

Although his daughter Lexi was originally diagnosed with juvenile arthritis when she was barely a year old, it wasnB次元官网网址檛 until around her third birthday that her parents found out it was actually Blau syndrome, Townsin recalled. Since that time, heB次元官网网址檚 set up a foundation to find a cure and attended several international conferences on rare diseases to learn as much as he can about the disorder. B次元官网网址淎 big part of the problem is there are only 200 known patients in the world, and very few specialists even know about it globally,B次元官网网址� he noted.

Townsin is organizing a symposium in Victoria in the spring or late summer of 2020 to address the lack of data. B次元官网网址淚 have buy-in from doctors in Japan, the U.K., Belgium and the U.S. all committed to attending. Sharing research for the first time, bouncing ideas off each other and coming up with better strategies will lead to a cure.B次元官网网址�

Townsin is keen to hold the symposium at Royal Roads University, where his wife, Cheryl-Lynn, works in student services while completing her masters in Global Leadership. B次元官网网址淩oyal Roads has been absolutely amazing in supporting Lexi,B次元官网网址� Townsin said.

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Anyone who has ever spent time with Lexi can understand why everyone is so eager to help, said Mallin Jiang, international training and development officer for professional and continuing studies at RRU. B次元官网网址淎 group of students from different universities across China met Lexi and she melted their hearts,B次元官网网址� Jiang said. The students were here for a one-semester term taking leadership and intercultural communications, with the main focus on business. B次元官网网址淭hey organized a fundraiser in May that raised more than $800 for the Cure Blau Syndrome Foundation in less than two hours, but they wanted to do more than just one event,B次元官网网址� Jiang added.

B次元官网网址淭hey committed to spreading the word about Blau syndrome when they returned to China through social media, which is key. They want to make a positive impact in their country and beyond. Students do a lot of self-leadership here that they take back home to inspire leadership. We have put a real focus on inspiring other students to start similar initiatives. ItB次元官网网址檚 inspired me personally. We have many programs that involve volunteering and we could forge a connection through Lexi locally and globally.B次元官网网址�

A dozen groups of international students from Japan, Mexico, Colombia, Korea, China and other countries will take RRUB次元官网网址檚 Summer English Experience program, which focuses on leadership and connecting with RRUB次元官网网址檚 teachers. B次元官网网址淲eB次元官网网址檙e building a fundraising element to some of the courses,B次元官网网址� Jiang said. B次元官网网址淪tudents from Mexico who visited last week are designing their own fundraising activity. My vision is to weave this into as many programs as possible by fundraising and gathering information through social media. ItB次元官网网址檚 a great opportunity to increase Royal RoadsB次元官网网址� involvement in the community by engaging students locally and internationally. They can be real ambassadors of change globally.B次元官网网址�

The more patients around the world that are identified with Blau syndrome greatly increases the potential for obtaining biopsies, natural history and information on disease progression, which is crucial to furthering research, Townsin explained. B次元官网网址淗aving Royal Roads involved locally and having the benefit of that global connection in compiling data is phenomenal,B次元官网网址� he stressed. B次元官网网址淚 canB次元官网网址檛 say enough about how grateful we are and what a difference that makes.B次元官网网址�

Townsin also wants to explore working with local businesses on the West Shore to get them involved in fundraising initiatives as well.

Although Lexi has to deal with constant pain, you wouldnB次元官网网址檛 know it if you spent any time with her, said Townsin, the author of several childrenB次元官网网址檚 books. B次元官网网址淪heB次元官网网址檚 the funniest character youB次元官网网址檒l meet and loves to sing. Some of the videos weB次元官网网址檝e made for our website give you a sense of what sheB次元官网网址檚 really like.B次元官网网址� Check them out at Facebook Me My Dad and Blau.

Lexi is excited about starting Grade 1 in September at Ecole John Stubbs, where she went to kindergarten. B次元官网网址淭hey have an awesome team of teachers there,B次元官网网址� said Townsin, a former Colwood resident who now lives in Esquimalt. B次元官网网址淪heB次元官网网址檚 had to miss a lot of school, but they really go the extra mile to make her feel included.B次元官网网址�

For more on Lexi and Blau syndrome, visit .

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